Lenire — User Experiences and Reviews

[Tinnitus Talk]

What Is Lenire?

Lenire is a newly launched treatment for tinnitus, which is claimed to reduce ringing in the ears. Lenire was brought to market by Irish medical device company Neuromod, after having conducted several clinical trials to assess its safety and efficacy.

Post Your Experiences!

Lenire users are invited to post here about their experiences during and after completing the treatment programme. We do encourage users to share their experiences so that others may learn from it! You may report on for instance: the device itself; how easy or difficult it is to use; whether you experienced any immediate or long-term effects from it; and your experience as a Neuromod customer.

We've had a number of threads about Neuromod and Lenire on Tinnitus Talk, but we started this one for the sole purpose of collecting user experiences, making it easier for anyone out there to find this information conveniently bundled together.

IMPORTANT: This thread is intended solely for posting by users of the Lenire device. To keep this thread easy to read and follow, anyone who is not currently a Lenire user is kindly asked to refrain from posting here (or moderators will remove your post). We may ask anyone posting here to provide us with evidence that they are indeed Lenire users. In doing so, your identity will not be publicly revealed.

Reliability of Information

Please note that the experiences reported here are entirely personal and anecdotal. We are publishing this for informational purposes only, not as any kind of structured treatment review. Beware that one or two user experiences are not necessarily representative of the average user experience. We would advise anyone using this information to decide whether to opt for Lenire treatment to wait until a larger sample of user experiences is available and/or until Neuromod has published all its clinical trial results.

Other Useful Links

Learn more about the device through the video Q&A we conducted with them in December 2018:

Q&A: Tinnitus Hub Meets Neuromod (Lenire)

Any questions or responses to Lenire users, as well as general discussions about Lenire or Neuromod, are to be held in this thread:

Lenire — Bimodal Stimulation Treatment by Neuromod

 

[Redknight]

Redknight/Andrew - Blog #1 (Assessment)

16/07/2019 - Neuromod Medical, Old Lucan Road, Dublin.

This will be my first blog post, I plan to do so something similar at each notable stage of the journey. All my comments are mine alone, I have no affiliation with Neuromod; some are facts, some are speculation (I'll denote any speculation for clarity).

Some quick context; I've had very mild fleeting tinnitus as long as I can remember, but it would always go away after a few hours. In February and March 2019 I developed a feeling of pressure in my sinuses and headaches that lasted a few weeks. When the symptoms went away (10th March 2019) I had more permanent tinnitus that is still there today. I also experienced a loud screech whilst on the London underground on the 5th March, this is notable because I remember my ears hurt afterward, probably not a good sign.

I will try and go through my experience at Neuromod, but not go over things that have already been discussed at length in the Tinnitus Talk Q&A and in this forum thread, unless relevant.

I will not mention Neuromod staff names or personal details, or details of other patients that I met at any of my appointments unless they want to share their details themselves. No one asked me to keep any of this private, I just don't feel it's appropriate or relevant.

------

I arrived at Neuromod around 15:00 for a 15:45 appointment and they saw me early I think. There's a window and a Nest Doorbell, with a sign that says to press here and someone will be with you soon. The person on the front desk gave me an iPad with a quick questionnaire to complete; pretty much the same as the one you complete when applying online, but with a digital signature field to sign.

I was then introduced to the clinical director/audiologist who would perform some tests and evaluate me for the device.

I was asked about my tinnitus and my hearing, how I cope with it and how I felt generally. I explained that my tinnitus varies wildly throughout the day, from a barely audible hiss (2 out of 10) to a louder 'eeeeeeeee', which sometimes developed a noise to it 'SSSHHHHEEEEEEE' (4 out of 10). I already know I have very mild loss around 4 kHz from a previous audiogram, which I was asked to bring with me to give a baseline for discussion. I was asked about whether I'd used hearing aids before, but given my very mild loss, there was no indication that they would benefit my tinnitus.

I was asked about my mood and whether I'd ever been diagnosed clinically with depression or any other psychiatric disorders. I have not been, so the questions ended there. SPECULATION - I believe I would have been probed much more in this area if I did suffer from proper depression or other psychiatric issues which may lead to not being recommended for the device.

The audiologist then looked inside my ears and confirmed that I had a tiny amount of wax in my right ear, nothing to be concerned about. SPECULATION - I believe if I had significant wax build-up (enough to cause hearing loss), I would have been told to get that sorted and come back another day. The audiologist was probably looking for eardrum issues, like the line of light they see, etc, but there was no comment made about mine.

I was then asked to sit in the soundproof booth and I did the normal 'push the button when you hear a sound' test. They made it clear that it was the quiet sounds that mattered the most and indeed, this was by far the quietest hearing test I've ever had, it was almost entirely made up of sounds I could barely hear (again, I have only very mild loss, almost not worth mentioning). It is worth noting though, that the audiologist had a copy of a very recent, professional audiogram done in Belfast. They may have assumed good hearing at louder levels and not needed to test those. I was not given a copy of this audiogram and did not ask for a copy. I did not do the 'can you hear these spoken words over other noises' test that I've done before.

I did, however, do a tinnitus masking test. This was really hard for me, my tinnitus tends to increase in volume as I introduce noise. As I sat there in a quiet booth, the tinnitus was barely a low hiss, but as the white noise was introduced my tinnitus ramped up, or at least my perception of it. I had a stab at telling where it was masked but wasn't 100% sure. I was asked to go again, with louder noise and again a third time, each with louder white noise. By the third, I was pretty sure it was masked (I'll talk a little about exclusion criteria later).

Once out of the booth the audiologist confirmed that I would be recommended for the device and we had a chat to talk more freely about Neuromod, Lenire and as many of the questions I've read on here that I could remember, without being rude (spoiler - I was tired and could only remember a few). I'll just list these as they come to me;

Q. What would exclude someone from Lenire and have you excluded many people?
A. Obviously, the contra indicators which are mentioned when you complete the online form are crucial, any of those could exclude you based on medical/safety grounds.

Non-acceptance of the realistic chances of benefitting from Lenire (we have all seen the results from the trials by now), if someone believes, and cannot be dissuaded from a notion that Lenire is going to cure or definitely reduce their tinnitus, then they would not be recommended the device. That's not to say that you would be refused if you just had the wrong idea about it. If someone walked in because their friend got silence and they had to have it explained to them, but they then accepted the realistic chances of that, they would still be eligible. Neuromod doesn't want unhappy customers, if you are essentially saying that you will not be happy with anything less than silence or x% reduction, you will be unhappy.

Obvious things that could reduce your tinnitus, that haven't been tried yet might mean coming back at a later date. Not to say you are refused, but rather, go away and try something and come back in x weeks. Examples of this were people with hearing loss that had never tried hearing aids or didn't wear them enough. Also, if you had a significant build-up of wax that would impair hearing, you would be asked to sort that first and come back. We didn't discuss any more examples, but if you present with something obvious to try first, they will ask you to do that. SPECULATION - there was no discussion of supplements during my visit, I don't believe supplements would be something they would consider 'an obvious thing to try', but if you had a medical need for medications, that might fall into this category.

Hearing loss. This is discussed more accurately elsewhere, but you need enough hearing to hear the sounds. If in doubt, send an audiogram to Neuromod before traveling.

Psychiatric issues. This was a big one an not easily answered. We did discuss this in-depth, and I know that some of you will be annoyed by this comment. I believe exclusion criteria are there for a reason and our conversation was had after my assessment and it would be unfair on everyone to outline what to say or not say to avoid exclusion. All I will say is to answer the questions honestly, for everyone involved's best interests.

Yes, many people have been excluded, no numbers were given though.

Q. What about the exclusion criteria in the clinical trials and some of the other things I've read on Tinnitus Talk? Here I was specifically querying whether age, tonality, length of time with tinnitus or cause of tinnitus was a factor.
A. Not in the selection/exclusion criteria. The clinical trial needed defined parameters and people of a similar cohort. The only exclusion criteria that we see in this area is that you have to have had tinnitus for more than 3 months. SPECULATION - To be categorised as having chronic tinnitus.

Tonality, cause of tinnitus, somatic or non-somatic, one ear or both don't matter.

Loudness does matter, as your tinnitus must be able to be masked at an acceptable volume of white noise. The acceptable level was not defined in dB, but the audiologist is looking to ensure you can listen to the sounds at an appropriate volume and that you don't need sound blaring in your ear for an hour to mask it.

All that said, there may be data in the future that suggests that specific forms of tinnitus may be better or worse affected by Lenire, they just don't know yet.

Q. What are your thoughts on people traveling from across the globe to get Lenire?
A. (Controversially) Whilst we can't legally stop people coming, they are doing so at their risk and take up an appointment slot for someone else. The thinking here is that, despite what many say, a large number of people just don't come back after their first appointments when they have traveled from far afield. MY THOUGHTS - being faced with an actual device, financial bill and the stark realities of how likely you are going to get silence or a significant reduction, many just decide to stop or wait a while before continuing. I had those feelings myself, I was convinced I was doing it until I got there, and I had a wobble when presented with the information in the clinic. It's nothing I don't already know, but don't assume you will be in the 80% who get a benefit, be prepared to be in the 20% and overjoyed if you're in the 80%.

Q. To the device fitter, not the audiologist, because I forgot earlier. Has anyone had Lenire permanently increase their tinnitus during the trials?
A. No, not permanently. Many people experience changes in their tinnitus during the treatment and for a time afterward. Of those that had an increase in their tinnitus, all resolved shortly afterward and returned to baseline or continued to reduce. Some chose to leave the trial as a result of changes, they were tracked and returned to baseline. Neuromod cannot 100% guarantee that you will not get an increase in your tinnitus because of or during treatment, even permanently. All they can do is tell you what they saw in the trial data. MY THOUGHTS - EEK! That sounds scary.

Q. Is the device effective beyond 12 weeks?
A. To be clear, the trial length was 12 weeks, simply because it had to have a start and an end. Some people starting seeing benefit a few weeks in, some months, some never. We don't know what would happen if you used it for three, six or 12 months and you should absolutely continue to use it until you see fit to stop. If you need follow up appointments, those can be arranged at a charge, but you are by no means left without assistance, should you need it.

In theory, a person could see results when using the device and need to use it every day to maintain those results permanently, we just don't know.

Q. Have you had many trial members return to buy the device?
A. Yes, many. Quite a few were seeing progressing results but returned to baseline after the trial ended and wished they could have continued using it. SPECULATION - I think if people who were mild responders in the trial could use it for six to twelve months they would see better results.

That's all I can think of at the moment, it was a bit of a blur, to be honest.

--------

I was then taken through to the device fitter.

The device was demonstrated to me, although as a demo model, it didn't light up or produce the electrical tongue stimulation. Other than the obvious buttons on it, there were a few notable things;

The device is set to a particular volume and tongue tip intensity, based on your assessment. They adjust this as necessary throughout each review appointment. Yes, they ask you the same questions and put you through the same tests to do this. Interestingly (to me anyway), you can adjust the volume up or down in case you are using the device in a quieter or louder than normal environment, there is no clinical benefit to this, other than you need to be able to hear the sounds and you don't want to cause discomfort to those with hyperacusis. You can adjust the tongue tip intensity depending on your preference, but again, this has no effect on clinical benefit, it's just for comfort (down to reduce the tingle or soreness, and up to know it's doing something).

The tongue tip has numerous metal connections on it. If they lose connection with your tongue for 30 seconds, the device will pause the sound and wait for you to reconnect.

You can pause the device for a maximum of 5 minutes, to take a call or something, but no longer or you will need to restart the treatment.

They suggest you do nothing during the treatment, just zone out. Some read whilst doing it, but you should refrain from watching TV (subtitles), posting online, playing games, etc. SPECULATION - They inferred that it might be beneficial to even not read during the treatment i.e the less you do the better. That said, sleeping is not allowed and you should sit straight up to reduce the chances of the tongue tip slipping out and you nodding off.

You should split the treatment into two, thirty-minute sessions per day. It doesn't matter when you do the treatment but aim to do them at the same time each day. I suggested once in the morning before going to work and once in the evening when the kids are in bed and she agreed. I believe you could do it for a single sixty-minute session, but that seemed to be less preferred than two, thirty-minute ones.

The device/treatment/contract has a 3-year life/warranty.

Only people from the Republic of Ireland can choose option 3 on the pricing sheet.

You cannot share the device. You cannot privately sell the device without written permission from Neuromod. You cannot resell the device. It's all in the attached terms and conditions.

You do keep the device after.

That's about all I remember, for now, I had a lovely coffee with a Tinnitus Talk member afterward and drove home after paying for my car-parking

My return dates are as follows;

02.08.19 - Device Fitting - 4 weeks is a guideline, purely based on timetable availability, there is no legal, financial or medical reason for the 4 weeks. I got a free spot in the diary.
20.09.19 - Review 1
01.11.19 - Review 2

 

[Liz Windsor]

I had intended to give details of my experience of my trip to Dublin (from England) and my initial assessment at Neuromod, but as @Redknight has provided such a fantastic overview of his experience, which was completely consistent with my experience on the day (apart from the fact that he asked lots of relevant and interesting questions, and I didn't!), I thought it might be a good idea just to give an overview of my 'Dublin and Neuromod' experience in case it is of any benefit to anyone who may be, or is thinking of, going.

I arrived the evening before my appointment, due to flight times not making it possible to have the appointment and return on the same day. Also, not knowing how to get everywhere meant by arriving the night before made it less of a potentially stressful experience! (Less stress = lower tinnitus in my case).

Everyone I met on my trip was incredibly helpful: on the shuttle bus from the airport, on the bus to the hospital and even at Dublin airport on my return when I'd arrived ridiculously early due to it pouring with rain and preferring to be in the airport than wandering around aimlessly with my suitcase! A lovely employee at Dublin airport made it possible for me to go through to departures several hours early... not usually my airport experience I have to say. People on the bus to Lucan where I was staying looked up my hotel to make sure I got off at the correct stop, it was all so funny really. They practically waved me off and made sure I knew where I was going. The next morning, on the bus to the hospital, the driver just told me to sit down and for some reason then wouldn't take any money from me for the fare... maybe I looked mad, or desperate - not sure! Anyway, travelling around on public transport seems to be no problem to put it mildly.

The hospital is lovely, very clean, organised, quite new, lovely grounds. But it is NOISY! If you arrive early maybe go down to the lower level where it is quiet and you can look out at the grounds and a big fountain. I went up to the Neuromod suite quite early to escape the noise. If you wear hearing aids might be a good idea to take them out prior to the audiology/hearing test. My tinnitus would have been hugely louder if I hadn't taken them out a couple of hours before due to the noise in the hospital. I think the audiologist was pleased I'd done that, so not sure if it's something everyone with hearing aids should do prior to hearing test. Just my experience.

The Neuromod staff were very helpful, understanding, and knowledgeable. It seems that they do share the suite of treatment rooms with another Consultant, as fitting appointments were only available for me on Tuesdays and Fridays.. maybe those are the only days they have the use of the rooms. Probably as availability of the device increases they may need to increase availability of appointment days and times.

I appreciate that those of us who are opting to try Lenire are very fortunate to have an appointment already. I am very happy to take the chance that it may do something to improve my situation. I have been following Neuromod for more than six years as when I first read about it (when it was 'Mutebutton'), I always felt instinctively that it might help. Just my view of course. I do also feel that as time goes on and more people are using the device, and giving feedback to Neuromod, that other refinements will be made and those of us who have purchased the device in the early stages won't be 'abandoned' if there are further tweaks or changes that can be made to the device which may prove to be more beneficial in the future.

I go back to collect the device on 27th August - a few weeks away but my choice due to other commitments.
I have booked my flight and this time will be going there and back the same day.
Lucan is a good place to stay for anyone who needs to stay overnight. Easy shuttle bus trip from the Airport and then lots of buses going past the hospital. Although, of course, other people may have to purchase a ticket!!

Kind regards.
Liz

 

[Cojackb]

***Adding this post here from the original Lenire thread***

A summary of use from start to finish.

So as per the instructions from Lenire, find a comfortable seated position - upright preferably. In their words, this reduces the risk of you falling asleep during the treatment and the tongue tip losing contact with your tongue.

Switch on the Lenire device by pressing and holding the power button, you'll get a green battery light (top light) which indicates the battery is well charged. This turns orange when the battery needs charging. If the tongue tip is already plugged into the device, the status light for the tongue tip will pulse green (Left hand light).

There is also a status light for the Bluetooth headset (right hand light) which pulses blue until the headset is switched on and pairs automatically. So before treatment can start, you have to make sure this is connected and the status light changes from pulsing blue to solid green.

Once everything is plugged in and paired (it's very easy) you will notice the white light that appears directly underneath the power button. This basically means the device is ready to go and treatment can begin.

Place the tongue tip over your bottom lip so your lip sits just behind the notch and rest the metal nodes onto your tongue. It takes a bit of fiddling at first to find a comfortable position so you're not forcing your lips closed or pressing your tongue up the entire time. As soon as your tongue makes contact with the nodes, the pulsing green light goes to a solid green light.

Pop the headphones over your ears, they're comfortable enough for the length of treatment. During the training they do emphasize the importance of making sure the correct speaker is over it's corresponding ear, R - Right and L - Left. This is due to the device being configured for your audio profile and hearing levels in each individual ear. They've made this pretty easy...

Now everything's switched on, in your mouth and over your ears you can press play. You'll notice the white LED will begin to rotate clockwise around the light bars.

The first thing you'll hear is white-noise, it sounds very similar to waves on a shoreline or wind rushing through tree's - very soothing. There's a mixture of raindrop noises alongside slow piano chords. This in my opinion, is just ambient sound to make the experience more soothing. The important sound comes in the form of a strange chirp (I don't know any other way to describe it) - @Redknight @Allan1967 you guys might be able to explain that sound better than I can.

This "chirp" is much faster in that it will play multiple chirps per piano chord but they're still in sync. The reason I say this is the important sound is because as soon as the chirp begins, your tongue tip will begin to give off synchronized tingles onto your tongue. It's not an uncomfortable sensation, but it is very foreign in that it's difficult to relate to other feelings. They're very isolated tingles / pops in the exact position of the metal nodes on the tongue tip.

FYI - According to the product specialist at Lenire, these "tingles", their frequency and the way they are sync'd with the sound depends on the treatment you've been given. The impression I got here is there is more than one pattern that Lenire can choose from to set on your device (My interpretation of what was said, not fact).

The music varies slightly throughout the treatment, sometimes the white-noise is more prominent, sometimes the piano chords and chirps are more prominent.

Around 20 minutes into my treatment the white-noise was much louder than any other sound coming through the headphones - almost borderline with what I'd consider as my comfortable max volume and this lasted for a few minutes, at which point it returned to its default level alongside the other sound effects.

Truthfully, after 20 - 25 minutes of sitting, doing nothing and listening to the "music" it does get a little boring and you find yourself struggling to not get distracted by other things.

As the treatment ends, the music begins to fade out gently - there is no abrupt stop in sound. It's a gentle gradient until the sound fades into nothing. This indicates the end of the treatment and the white light will return back to its position under the power button.

Overall - The treatment is by no means uncomfortable, distressing or overbearing. It's a very user friendly piece of equipment and the treatment seems to have been refined to match. Volumes can be adjusted, intensity of the tongue tip can be adjusted and all the equipment is charged via USB which is handy. They do provide a charger in the box!

That's about as much as I can explain having only used it for 30 minutes, if there's anything particular you want to know then you're welcome to ask.

 

[jacob21]

Hi,

Just got my device.

I will post my experience...

Best of luck to all of you.

 

[Cojackb]

Week 1 Update

Similar to other members here, my tinnitus is noticeably louder since starting the treatment. It's certainly not a significant increase in volume but it's enough to make you aware of the change. This is most prominent immediately after a session with the Lenire device but can drop back off slightly throughout the day. It's certainly nerve-wracking and enough to make you question your commitment to the treatment so focusing back on the end goal here is important.

I've also noticed my hyperacusis is slightly more sensitive since starting the treatment. This is most likely down to me not wearing my WNGs nearly as much. I try juggling between the Lenire device and the WNGs but was advised by Lenire to give my ears a rest between the two, so something I will need to get more disciplined with.

I have also mentioned my visual snow being quite bad since starting the treatment. Unfortunately I can't be certain if this is related to the treatment, whether it's because it's been sunny recently or just tiredness. The latter two seem to have a real impact on my visual snow so will ride this out and see if anything changes.

As for the device and treatment sessions, there have been absolutely zero issues. It's comfortable to use, the batteries haven't needed charging since I started and in terms of functionality and Bluetooth connectivity, it's all been flawless. The Tongue-Tip or Spork as I now call it can be tricky to get into a comfortable position but that is subjective. I also increase the output of the Tongue-Tip some days as the default setting is very low and I struggle to notice if it's actually doing anything.

The only slight negative I have is the music / sounds can become very repetitive. In an ideal scenario and maybe something in future, they could introduce a couple of variations in audio that could be randomly selected per-session just to mix things up. BUT, this is a medical treatment and not an MP3 player so I would absolutely understand if this never happened.

I'll look at making another post at the 2 week mark.

Cheers,
Jack

 

[TinMan2019]

Posting in here as I'm one of the lucky (or maybe unlucky, if this doesn't work) people using Lenire.

I'm US based so traveled to Ireland to get this rather than wait for Susan Shore's device to launch.

I've completed my third day so far. I just do two sessions one after the other first thing in the morning, after my morning breakfast to get my 60 minutes in and before my morning exercise. It's not too bad. I just have to get up a little earlier.

I have noticed an increase in volume in my tinnitus. I'm not an expert but I'd guess I'm around 16 dB... Reason I say I'm not an expert is because I've only ever really had two tests for tinnitus, and those were both at Neuromod. At the initial appointment it was pretty loud, and I was told I was at 16 dB, which is the same as I seem to be now today, 3 days in... And it's been unrelenting staying that high. Then my other tinnitus loudness test was during the 2nd Neuromod appointment (device fitting). My tinnitus was having a good day that day and though it was there, I wasn't noticing it. They said I was rated at 12 dB during that test. I was also asked how bothersome my tinnitus was on the 12 dB day. I said zero! 4 dB does seem to make a massive difference. So if I can get it down to that, I'll take it! It doesn't need to be completely gone, just not as intrusive as it is, on the louder days such as today.

During my device fitting appointment last week, I was told this increase in volume may happen. So again not too concerned. I will say I had a lot of good days prior to starting treatment (probably due to being on a two week vacation in England (perfect timing to get those appointments at Neuromod in!), so this recent spike is more noticeable now that I'm back to my normal routine and back in the USA.

I deal with tinnitus ok. Of course I'd like it gone... I wouldn't be spending all this money if it didn't bother me. However when I first got it, I was all doom and gloom. Peaking with feeling down around this time last year. Doctor prescribed me some antidepressants, though I tried taking them, they gave me a very bad stomach, so I stopped taking them after a couple of days and just dealt with my tinnitus. I'm glad I didn't take the antidepressants, because I bounced back, and would have otherwise attributed feeling better to the meds, when it was just a natural return to a non-depressed / down state. Anyway, just giving my own psychological profile here, as I know it plays a fairly big part with tinnitus.

Today I'm at a fairly decent comfortable stage in my life, kinda happy if anything a little anxious perhaps. I have enough hobbies that can keep myself busy enough to completely forget about tinnitus for maybe a day, but it always comes back and never really lets go. I may even get a couple of days in, when it's not bothersome at all. I really REALLY appreciate those days. But who can blame us for being upset on the bad days. Who wants that damn high pitched squeal going on!

So anyway, that's my profile. I'll keep my experience up to date here in this thread, in hopes that it helps others make a decent decision if Lenire might be for them.

I really hope that we read loads of 'yeah it's gone /downgraded from whatever to whatever' from many of us here in this community! Even if it's not me, I'll be happy for you. And if it doesn't work on me, I'm sure there will be a cure down the road and will just get along with my tinnitus in the meanwhile.

Good luck all!

 

[Redknight]

Week 3 update:

My tinnitus is almost gone.

It flairs a little from high volume white noise, like road noise when driving fast, but it's very temporary now and it's extremely mild; hardly annoying at all.

I've had a week of almost silence now and every day is minutely quieter than the day before.

The sound that is still there is barely audible and I only ever hear it when I listen for it.

A good headache or noise exposure, I have no doubt would bring it back for a while, but I've had neither this week.

I did have a worsening of my tinnitus around week 1 or so but it went away for me after 2-3 days.

A

 

[TinMan2019]

Week 3 update from me.

Unfortunately not much to report, other than I'm feeling a little foggy, due to a bad head cold. So with that in mind, my tinnitus is louder than my typical baseline. Which is where it's mostly been during treatment over the last three weeks. With the very occasional day here or there of less than baseline (love those days).

The recent continued spike could be due to the cold? Or it could be just that the treatment gets it going and all riled up, I just don't know. Either way I'll solider on and keep at the treatment. Every morning 1 hour.

I'll report back in a couple of weeks.

 

[Liz Windsor]

I collected my device last Tuesday, 27th August and have used it nine times to date.

I won't repeat all the instructions given by other users above which they have described very accurately. What I will say is that the device is really easy to use. I'm not at all technically savvy but you don't need to be - it's incredibly user-friendly and you can't do anything incorrectly or it won't switch on. Just make sure that the headphones are over the correct ears.

The training by Kiera (not sure of spelling, sorry) was extremely well done, she obviously has perfected this and it all made sense to me. She is very patient and a pleasure to deal with. All the people I met at the Neuromod suite of offices were really helpful and seemed very positive and upbeat. Hopefully this suggests they are getting some good feedback.

The sounds played through the headphones remind me of, in no particular order, waterfalls, white noise, burbling sounds and a kind of underlying piano sound, just notes, not really a tune. It varies in pitch during the 30 minute treatment but the 'tune' if you can call it that, stays the same. I don't find it all irritating, in fact it's quite soothing to me and I find I'm humming it during the day between treatments... I know... sounds daft, but anyway... There's quite a significant difference from one side to the other. The sounds coming in on the right side (more hearing loss there) feel much more varied and higher pitched at times (which I actually find very comfortable, like it's reaching a part of my brain that needs to hear it). The left hand side sounds are more stable, in some way.

I've had no adverse effects so far, no noticeable changes as such in either direction, although possibly my hearing feels a little more acute. I've had to turn down the volume on the radio and tv a little compared to the usual levels. Although this could be my imagination. I'm doing my best not to focus on it or how it feels after each treatment as you could send yourself a bit mad looking for, or imagining things that aren't there. I'm trying to take the long view but also do my best to do the treatment when I'm feeling reasonably settled and not in a rush or anything.

I haven't fiddled with any of the settings. There is the option to turn the volume up on the headphones, or to increase the intensity of the tongue tip, but I haven't felt the need to do that. I'm sure some people will want to play around with the device though, just because they can! I was told this in no way affects the treatment, it's all down to personal preference.

I shall post an update when I've been using it a while longer.

Hope this is of interest.

Liz

 

[jacob21]

Here is an update of my Lenire experience:

I have been using Lenire for about 1 month. Doing two 30 minute sessions per day is not easy, so I rather try to do a 1 hour session at a time.

After each session I have an increase of my tinnitus. Sometimes on good days I have to motivate myself to do my session because I'm afraid of my tinnitus getting worse. I have missed sessions. For the past few days, no matter if it's a good or bad tinnitus day, I have been doing my sessions.

In general the increase in my tinnitus after a session can last from a few minutes to a few hours.

Regarding the evolution of my tinnitus it is quite difficult to say if I feel a benefit. My tinnitus is very variable (it fluctuates). My tinnitus used to be 8/10 on bad days and it seems to have dropped to something around 6/10 when I'm having a bad day. So more manageable but still very bad compared to my good days where my tinnitus can be 2-3/10.

I'm hoping that the improvement comes from the Lenire treatment.

I will keep you updated.

Good luck to all.

 

[ruud1boy]

Week 4 update from me.

Nothing to report unfortunately, either positive or negative. I haven't experienced any worsening on my tinnitus symptoms, but equally I haven't seen any improvements yet.

I've done my sessions twice a day without fail, albeit I haven't managed to stick to set times each day. I try for 5.30 am and 4.30 pm and would say I manage that 60% of the time. On the days when I'm unable to stick to my usual times, I'm usually doing it a bit later - early morning and then early evening.

I had taken to clicking the audio track down by 2 notches on every session, but after speaking to Neuromod last week I've switched to just clicking it down 1 notch. I'd be uncomfortable in leaving at the default volume, as it seems damn loud.

 

[BigNick]

Week 4 Update.

Overall, I have had some improvement, my tinnitus is softer and less intense. However, I have found it to be a little elevated immediately after a session but it usually subsides within 30 minutes or so.

I have multiple sounds that fluctuate, I'd say the most unpleasant element of my tinnitus has subsided a fair bit.

However, I still have tinnitus that bothers me, it's just not as bad...

The changes have given me a little hope and optimism for the future.

I'm due back there on the 17th for my signal timing update.

Take care everyone.

BN X

 

[Redknight]

Week 4 Update

After such a good start my tinnitus has reverted to almost baseline for about half of this week. It's still reduced from where it was before starting, but I haven't had any days of silence this week and 2 days of it being 90% baseline.

I echo the othersä comments about it spiking shortly after the treatment for a while.

I'm still very hopeful. It's very changeable and definitely feels like something is happening.

A

 

[Allan1967]

My 6 week update.

During the first few weeks of using the Lenire as per recommendation, I experienced my tinnitus becoming seemingly louder and definitely more reactive, which caused me a lot of concern. I spoke with Neuromod and they assured me increases where common amongst trial participants. I missed a few days and dropped to once a day session, which Neuromod where aware of.

Neuromod have been more than happy to help and advise throughout.

Anyway... I determined that the reason for my increased reactivity was the white noise hiss/rain effect.

I went back for my 6 week follow up earlier this week. Completed a THI and did the masking test level test again.

I had already asked about removing the hiss, which I was told was possible. I listened to about 7 sample tracks... 5 of which had some form of hiss on them with what sounded like telephone keypad beeps. Two tracks were simply telephone keypad beeps, 7 in total, repeated for the 30 minutes. I chose one of them.

That's my update. However I'd like some advice/thoughts.

Tuesday August 20th... house alarm went off twice, the indoor panel I was exposed to for a matter of seconds each time and is muffled. Second time it went off, middle of the night, I stayed up and started hearing faint bells, which stayed with me all week, I gave Lenire a break during this time, restarting on Sunday. I had two good days on the Monday & Tuesday, went to bed, woke up with tinnitus screaming at me.

Since then my tinnitus has been screaming at me non-stop, plus these bells. I had two more manageable days last Saturday & Sunday, but I put that down to taking Mirtazapine, which seems to dull the senses somewhat.

I am terrified that the house alarm, then followed by the white nose hiss of Lenire has spiked my tinnitus and is at a new level and is permanent because it hasn't abated any - at least not naturally in nearly two weeks. It's intense in the morning and then just becomes supersonic by the afternoon and evening.

Is this likely to be permanent, I wonder?

I'm happy to keep using Lenire as it's just like using a telephone keypad and I can set the volume quite low.

 

[Hazel]

I just want to thank @Redknight, @Liz Windsor, @Cojackb, @jacob21, @TinMan2019, @BigNick, @ruud1boy and @Allan1967 for sharing their experiences publicly so that others can learn from it and make informed decisions.

I know some of you have also filled in our User Experience survey, which will allow for more structured data collection - you can be assured you will remain anonymous.

Please keep posting here and filling in our periodic surveys; you are doing the patient community a great service!

 

[TinMan2019]

6 Week Update from me.

I felt I finally had some positive results early on in late week 5, where i had perhaps 5 solid days in a row of decent improvement. I was pretty happy about it, I don't think I'd ever had 5 days of improvement. I wouldn't say gone, but a decrease in intensity to the point tinnitus wasn't one of the main thing thoughts going on my mind.

However during the last few days my tinnitus came back.

I'm actually doing a treatment now. I decided to move my mornings over to early evenings, because mornings is where I typically do my exercise, and I just can't get it all done. I was starting to remove the exercise out of my daily regiment to fit in my treatment and that in itself can have negative consequences in weight, mental health, which can then lead to an increase in tinnitus. So now if I get up early enough, I'll do both in the AM. Failing that I'll do my exercise as priority no.1 and move my treatment to the afternoon.

But 5 days is a positive sign. I don't think this will completely cure my tinnitus. But if i can get a reduction that sticks, then it'll be money well spent.

 

[Redknight]

6 Week Update

It's been a rocky road, but the trend over the six weeks has been downwards.

My tinnitus is very low and often silent now. I'd say I hear it about 5% of my day.

The volume has decreased dramatically and the buzziness has gone away.

Do bear in mind that my baseline was mild to moderate, so I can't speak for severe or catastrophic tinnitus sufferers.

I had my tinnitus for 5 months when I started Lenire. There might be something in how new my tinnitus was in that Lenire might work more effectively with newer sufferers, I have no idea. That said, the timing of my reduction in volume is too much of a coincidence to say it was not Lenire.

I'm back at Neuromod on Friday. I'm going to enquire about extending my treatment over 9-12 months in the pursuit of silence, even if that costs me more money and time.

A

 

[Liz Windsor]

Well, as promised, here is my three week update. Everything I wrote in my previous post is still the case so I won't repeat myself. There is, however, definitely a difference in the volume and tone of my tinnitus. I try to do each session at approximately the same times each day - around 8am and 6pm, although this has occasionally been done at a different time, including two sessions back to back on one occasion, and I have also missed one evening session as it wasn't possible to do it. Apart from that, I have stuck with my self-imposed routine!

The difference I have noticed, and which is now happening consistently so I am positive it is not my imagination, is that after the morning session although initially the tinnitus is quite a bit louder, after about an hour it changes from it's usual high pitched screeching drilling sound to a soft hissing, fizzing sound, which is absolutely delightful by comparison. This happens on a daily basis. It doesn't last all day, maybe two or three hours and then starts building up back to it's usual level and tone.

The same is not true of the evening session. In fact the evenings and the night times are not great but I can't tell if it's any worse than before using Lenire or just because of the comparison between that and the new, daytime sound. I hope this is making sense!

The other noticeable thing is that my hearing seems to have changed. I have to keep removing my hearing aids (used primarily for tinnitus rather than because of my hearing loss which I understand to be mild/moderate). Everything seems really loud - uncomfortably loud in fact. Not sure what's going on there but again, I'm not sure if it's my perception or if something has actually changed with my hearing. Possibly at my (in my case, five week) check up back at Neuromod on 1st October they might be able to shed some light on it.

I'm just trying not to focus on it too much or keep questioning any changes. It's very early days but I can say those few hours of hissing and fizzing make me feel cautiously optimistic!

My tinnitus, probably the same with many people, has always been worse in the evening and at night anyway.

I'll post again either after my follow up visit to Neuromod on 1st October, or sooner if I have anything definite to report one way or another.

Liz

 

[ruud1boy]

6 weeks in - I was there on Tuesday and they've tweaked the settings. I'm now on 'PS4', whatever that means. There's no discernible difference between the previous settings and the updated ones - they said it was to do with the timing of the tongue stimulation and it probably wouldn't be noticeable.

I haven't seen any improvement as yet. My first week was promising - my tinnitus was at the lower end of my usual range for the week - but since then, it's business as usual. Good days, bad days - upper moderate to lower severe - with some fkin horrendous days thrown in for good measure. TBF, the few really bad days I've had have been my own fault rather than anything to do with the device - I've been pushing the boundaries of what I can get away with in terms of beer intake. Utterly stupid.

My MML, using broadband / white noise has been 48-52db, which they tell me equates to about 75-80 dB of pure-tone, real world noise.

I haven't experienced any adverse affects at all from using it. No spikes, no worsening for an hour after each session or anything like that.

Still trying to stay positive and optimistic - still early days.

 

[Redknight]

Review 2 update:

Just had my review two meeting and have some info to update.

Demand is still high, no updates on when the next invites will go out.

Confirmed that they change your settings at this point. The settings change involve some sort of change to the auditory stimulation and tongue tip timing.

Recalibration of tongue tip strength and audio volume.

Neuromod's focus is on three areas;

• Looking after current patients
• Getting the trial data out
• Expanding to Germany ("in the next few months, but we have no exact date yet")

They are seeing really positive feedback from the majority of users. Much the same as during their trials.

If the current/default profile doesn't work for you, they change you to a significantly different one at this stage. If it is working for you, you get a slightly different one, but much the same soundscapes etc.

A

 

[Cojackb]

Haven't posted in a while, this is mostly due to taking time out to focus on life and treatment. I found reading other people's feedback or opinions in some of the threads very easily swayed my approach to the treatment.

To catch you all up, the Lenire treatment has had very little impact on my tinnitus since the beginning. I experienced the spikes and an increase in overall volume which is to be expected and was made very clear by Lenire before undertaking the treatment.

I had my 6 week catch up on Friday, although this was pushed out a couple of weeks due to illness.

The long and short, my treatment program has been completely changed which consists of a reprogram of the Neuromod device, removing the default sounds and replacing them with much more basic sounds and a change in timing.

Lenire have been very clear in that this is nothing abnormal and it's behaviour they've seen during the trials. Some people just need a slightly different approach, which they are equipped to deal with.

I've now sat through a few more sessions and can happily say I was not distracted by my tinnitus for the majority of Sunday. I'd usually hear it over the TV, my fan or my sound therapy machine for sleeping, but yesterday this was not the case. That's my first day like that since starting the treatment.

There's still another 4 weeks before my final follow-up with Lenire, so plenty of time to see if Sunday was a one off or whether the treatment is finally having an impact.

Fingers crossed!

 

[Mike T]

Week 9 for me and since my 6 week checkup when the settings were altered, this is the first time in 19 months I've had a pretty good week. Today especially I felt like my old self again. My tinnitus hasn't bothered me all day, I have still heard it though so it's still there. Trying not to get my hopes too high as tinnitus is an up and down rollercoaster.

Just for the record.
The first 6 / 7 weeks for me were hard. I got worse, I was at times like I was at the onset of my tinnitus, but I was warned this could and often happens.

No promises from Neuromod on treatment outcome as they can't give guarantees on a condition as complex as tinnitus, but it's a professional set up and the people are caring and helpful dedicated professionals.

I was given some reassurance as the audiologist said they have had good results with other people with my hearing profile. I have attached my audiogram.

Please note I haven't posted before about this, and will only post again if I have another update with progress on the treatment. I just posted to keep people updated, not to answer questions.

So I'll duck out of the forum for now and will post again if I have any updates.

 

[dfl]

Dear Tinnitus Talk forum members,

I am currently halfway through my treatment with the Lenire. I must say I had a very stressful and busy month with moving, travel, and work on a new television series, but my time with the Neuromod device has helped a lot. It's hard to quantify — sometimes I feel as if it's just given me that 20 percent boost that makes it seem possible to overcome it and find some joy in life.

I'm certainly working and functioning at a high rate.

Three days ago, I went grocery shopping and beforehand sat down in a restaurant to grab a burger and watch the ND football game. The place wasn't noisy, but I couldn't hear the tinnitus, for an hour, the first time since it started that June years ago.

Please forgive me for not checking in more. I want to give proper time. Bless you and @Markku and everyone.

 

[Ade]

Hello folks.

First time on Tinnitus Talk for me. I have been using the device since the 4th of August 19. I was really positive to start. I have tinnitus in my right ear which is a high pitched whistle. In the left ear I have hyperacusis and fluctuating tinnitus.

I used Lenire for 30 minutes a day. After 4 weeks I noticed that both the tinnitus and hyperacusis were getting worse.

I had my review appointment and they suggested that I make more of an effort to get up to 60 minutes a day.

This set both my tinnitus and hyperacusis through the roof. It has got so bad that I have had to stop using it. I need things to settle down as it is breaking me at the moment. I have had tinnitus for 4 years so I am used to the struggle.

I plan to start again but need to regroup.

I had hoped that I would be one of the 60% who benefit. Keep your fingers crossed.

 

[Liz Windsor]

Hello, this is my five/six-week update since using Lenire. I went to Dublin on Tuesday 1st October, for my first 'review' appointment. I had previously sent an email to the team at Neuromod requesting a new hearing test at this appointment as I was convinced that my hearing had become more 'acute', for want of a better description.

I met with Caroline, who asked about my response so far to Lenire. I told her that after week one I noticed that after the morning session my tinnitus definitely seemed to calm right down an hour or so later, to a hissing/fizzing sound which lasted for a few hours before going back to its usual screeching/drilling sound. This has not continued after week four which was a bit disappointing for me! She explained that this is why they have the six-week review, so that the timings or soundscape can be changed, to drive further benefits. I liken it to, possibly, dieting, when you hit a plateau and need to change what you're doing! (My theory, not theirs).

My hearing test showed, surprisingly for me, that my hearing had not changed at all since my initial assessment appointment. Caroline then asked if I put my hearing aids in immediately after finishing my sessions with Lenire. I always did this in the morning session, and often in the evening session if it wasn't too close to bedtime. She suggested it may be a case of my auditory system being overstimulated; using the device and then immediately putting in my hearing aids, and suggested it would be worth not putting them in before and after the session for an hour or so, to let everything settle down as even though it's not obvious something is happening with the device when you are using it, it is stimulating your auditory system.

However, rather than fiddle about guessing when, or how long, to stop using my hearing aids, I've stopped wearing them completely. I don't really need them for everyday hearing. I think they had become more of a 'comfort blanket' which only helped with the tinnitus on a minimal level. I don't want to compromise or confuse any potential results/benefits with Lenire by wearing hearing aids I can actually manage without. At least I feel if something changes it's not due to messing about with incoming sounds or noises.

Following my conversation with Caroline, she said they were going to alter the settings on the device. I actually like the soundscape – I know some people find it unpleasant, just shows how different we are. They reduced the volume on the sound, not too much, but kept the original soundscape and also changed the timings of the tongue-tip. It's a very subtle change, if I wasn't looking for it I probably wouldn't even notice. This is what I was told as well – that I may not notice any difference.

Ciara re-did the settings while I waited. I reconfirmed my next appointment with Grace and set off on the return trip to Dublin airport. It poured with rain all day but everyone I meet on these trips is so helpful. I ran for the shuttle bus on arrival as it was just about leaving. The driver stopped to let me on and the only other passenger on the bus showed me another stop to get off nearer to the hospital instead of the ridiculously complicated way I've got there in the past and even volunteered to walk with me, in the pouring rain, to make sure I got to the hospital ok. I did say no, though... she did have a small toddler and an elderly mother to look after. I'm definitely going back to Dublin one day for a proper visit that doesn't involve tinnitus!

It's been a few difficult days to be honest. My tinnitus feels louder. I don't think it is. Just my perception of it as not bringing in other sounds via the hearing aids to 'soften' the tinnitus drilling noise. As I'm sure you will appreciate, any benefit, however small, is hard to give up.

As ever, the people at Neuromod are empathetic, helpful, professional and it's only the journey to Dublin and back (my choice to do that obviously) that feels a bit daunting. I believe that Neuromod are doing their best to tailor the device, as far as possible, to each individual, depending on their response after the first few weeks.

There's not really much more to report at the moment. I'm due to go back for my second review appointment on 12th November. If I have anything interesting to say prior to that appointment I'll make another post.

Regards.

Liz

 

[Annpann]

Hi all,

I had my first meeting with the Lenire team yesterday and I was accepted for the device.

I don't really have much to add about the experience that hasn't already been posted.

The staff are lovely. I did have a problem with the airport hopper buses. The one out to the Liffey Valley Shopping Centre was 20 minutes late and the one back to the airport was 40 minutes late (and it was freezing hanging about at the stop). A lady who catches this bus regularly told me that it is a common occurrence for it to run late.

Other than that it was a good experience. There is a fair wait until I go back to collect my device - my next appointment is on 17th December.

 

[AliceW]

Hello,

I had my first appointment at Neuromod yesterday.

A little stress shot just before my appointment... The alarm from the clinic went off while I was in the waiting room!

I was then received by Caroline, and I felt immediately confident. I found her extremely professional and expert in the field of tinnitus (it's nice to finally find a person who knows the subject and provides a treatment solution).

She asked me the cause of my tinnitus, she gave me an audiogram and a right-left sound detection test.

My audiogram is very good, I don't have any detectable hearing loss.

She explained me the theory of hidden hearing loss which probably caused tinnitus in my case (nerve fibers in the auditory circuit would be damaged and in compensation the auditory system would create sounds...).

Bimodal stimulation aims to calm this over-excited auditory system.

She thinks that Lenire is suitable for my profile (good hearing and tinnitus "quite easily" maskable), she said I would probably have good results (although we can't possibly know in advance and they can't give guarantees).

She advised me to practice cognitive and behavioral therapy during my Lenire treatment and any other technique that can help to stay positive and relaxed (acupuncture etc...).
She really insisted on this point.

She told me they had good results with Lenire.

-Do not panic if tinnitus increases a little at first (it can happen, especially after 3-4 weeks and it always decreases).
-Do not worry if you do not experience improvement in your tinnitus in the first 6 or even 12 weeks, it does not mean you will not improve later on (clinical trials were based on 12 weeks only, but it is likely that by continuing longer the results would be even better).

I will pick up my device on December 20th.
I remain optimistic about Lenire.

 

[Lucky97]

Hi, I'm 22 years old.

My tinnitus started 1 year ago due to an ear infection.

My first appointment with Neuromod was on September 3rd.

I have no hearing loss. The first visit was very good.

I picked up my device on October 15th.

After using it at first I didn't notice any differences in my tinnitus except for the second day.

Now it's been 5 days and I feel it's soothing my tinnitus.

I am very confident in the treatment.

My tinnitus is low but it's really annoying in the head. I have tinnitus in my right ear, it's unilateral, and also at the center of the head.

My next appointment will be on November 26th.

 

[Cojackb]

Final Update (Sort of)

On Friday I attended my final appointment with Neuromod to follow up on my 12 weeks of treatment. As previously mentioned, my Tinnitus hasn't really changed since starting out with Neuromod but there has been a recorded increase in volume (around 6 dB). I strongly doubt this is to do with the treatment itself, more likely around a lot of stress and anxiousness building up for a big move across the world in a couple of days and some really tough chest infections I've been struggling to shift.

The final appointment is pretty text book, fill out some THI surveys, undergo a Minimum Masking Level test, have a good talk about progress and what's going to happen moving forward.

In terms of what happens now that my official 12 week program is over, Neuromod have adjusted my device and advised to keep using it. From the information they have on hand, they would actually categorize me as somebody who would see results fairly promptly but with tinnitus being so complex and unique to every person, it's nigh-on impossible to say why my tinnitus hasn't changed.

I did ask the question nobody really wants an answer to, in that "Is there a point where I need to cut my losses and accept the treatment isn't going to work?" - the short answer is no. Due to the nature of the treatment, the longer you can persist with it, the better.

As for support moving forward, Neuromod would usually schedule you in for a 12 month follow up to check on progress and how your tinnitus has been in the months following on from the treatment. Unfortunately, my circumstances mean I won't be anywhere near this side of the world so we have agreed to leave this open for now. Neuromod have also mentioned that they're available for phone calls and emails if there are any questions and that if I'd like my device updated / timings changed, they are more than happy to handle this via postal services.

Honestly, I've been a bit disheartened in the build up to the final appointment due to my tinnitus not really changing. I had gotten to a point where I was ready to call it a day and to move on as best I could but the final talks with Caroline have refreshed some of my optimism and added a bit more motivation to persist with treatment. Regardless of the outcome I can wholeheartedly say I do NOT regret committing to this treatment and sincerely believe Neuromod are currently the best chance many of us have at getting some relief. Their commitment to their patients and willingness to accommodate changing needs or scenarios has been second to none, I still think the money was well spent - even on an educational stand point.

I'll try and update again in around 6 months, as long as I stay committed to the treatment.

Some additional content from questions and discussions;
- Neuromod have seen an extremely low number of people not responding within the 12 week window. Further to this, some of those people have gone on to see results after the 12 weeks with continued use of the device.
- They are currently trying to work on ways for users to update their devices from home via the use of a web portal, where possible.
- There are 10 treatment programs at this moment in time. However many of these are not used as Neuromod focus on the programs that led to the best response rates during the trials.